Friday, April 08, 2011

The Day The Earth Shook

Today, Domenic, a fellow Vita staff, and I did a presentation on Disability Pride at a conference attended by people who work with those who have intellectual disabilities. A question regarding people with disabilities who will not hang around with or ever date other with disabilities due to both self hatred and prejudice against others with a disability led to another question and statement.

I'm not going to get this exactly right. It's hard to memorize something when in shock. One person began a comment by saying, 'I don't want to seem reactionary, but do we really want to have more people with disabilities? If we encourage people with disabilities to have pride and to value others with disabilities we are going to perpetuate disability and do further damage to the gene pool.' This was followed by a long explanation that people choose partners so that they can have good strong healthy babies with them. I was in shock.

For the first time in my history of taking questions, and I've taken a lot of questions, I said, 'I am really offended by what you just said.' I've been offended before, but not like this, never like this. I continued 'Here I sit, a man with a disability in a wheelchair and listen to you say that the world would be better without people like me in it.' I referred to his comments as coming out of Nazi science and myths about sexuality and disability. The room was tense and explosive. I said to the audience that we'd get sidetracked talking about genetics and eugenics so we needed to get back to pride.

I was so pleased to have a co-presenter who could take over and give me time to settle myself down. All sorts of feelings flew around inside of me. I'm not going to name any of them here, but I'm guessing you can guess. I never expected to have a question about the validity of people with disabilities as human beings and as having a right to exist come from someone attending a conference on disabilities - as a professional.

33 comments:

Right now, this seems to be the prevailing attitude here in the States with regards to servicing people with disabilites. The country is going broke and the FIRST cuts they make are to Medicare and Medicaid that serve the elderly, and disabled. We just lost our waiver because our son wasn't "hospitalized enough to qualify". They use stupid excuses like this to justify policy changes that are out and out killing people. God forbid you point it out - they shrink back in horror and then high five in their offices for saving such a huge amount of money. Be ready, I have a feeling there is going to be an influx of folks comeing over from the US just to obtain healthcare. :(

I keep wanting to say something stupid, like "the worst thing about this is ___". But then I think of something even worse about it.

I wish I thought his comments would get him fired from a job where he is supposed to be supporting people with disabilities. I wish I thought his comments didn't represent a significant portion of public opinion. I wish I thought a little education about genetics not being the cause of most disabilities would help.

One more case of someone 'knowing' that his own life is so much more worthy than the life of someone who is a different sex, color, cultural origin, sexual or religious orientation, nationality, or ability -- and thinking it obvious that everyone else would agree.

But - there is always a but. I have a congenital heart disease and nobody can actually see my disability. People judge me from the way they see me. And I despite everything I am perfectly included. I have a job. I have a loving and caring family. I have friends with difference and of the normal kind all over the world.

I studied. I am mentally fast.

But I always always still feel the need to make up for all that I lack. I have a deep fear not being worth of all the money they put into my upbringing. But I have no idea why.

If such a fear is somehow so deep inside myself I wonder where it does originate from?

And I wonder if I can ever stand up (mentally) against such a blunt sentence.

Julia, it would be presumptuous for me to tell you why you feel the way you do, so I won't cause I don't know. But I wonder if it's because you are surrounded by people who measure 'worth' in dollars and cents, who see people only in terms of fiscal contribution. I notice that those who decry money spent on services never complain when they need services at some point in their lives. It's money spent on others that they deem less worthy that annoys them. It's difficult not falling into a culturally held bias. Sometimes in my power chair I feel guilty that the government assisted me with it's purchase - I have to work against those feeling because I don't believe they are mine, I believe they have been foisted on my by a society that constantly tries to hijack my princples.

I am shocked that someone would have the nerve and be so insensitive. But I am not shocked by what he said. How many fetuses with Down Syndrome are aborted every year? How many people think Robert Latimer is a candidate for sainthood? Eugenics is still with us. You might be be interested in this little number by Nabil Shaban:

http://www.youtube.com/watch?v=4onqBSSmV7U

I am so sorry that you had to endure this horrific prejudice.

At least one mystery is solved - what attracts us to our partners is their reproductive capacity :-) Give me a break!!!

I like to think I would have stopped him there and said, "Then don't." He should at least have to take responsibility for his statement rather than trying to excuse it by making it seem like it's okay because other people are thinking it.

On the other hand, I am glad that the other people in the room had the opportunity to hear your strong response to his statement. Perhaps it will give them the words they need to combat that type of prejudice in their own environments.

Dave, thank you for all you do on the front lines of this fight against injustice and inequality.

As a mother of a son with Down syndrome, it has not been an uncommon occurrence to be asked whether I knew prenatally that Gabriel has Down syndrome.

When people ask this question, it is a veil of asking WHY I would purposely choose to have a child with Down syndrome.

There are no other explanation for this type of question.

In a world where we continuously measure self worth on material achievement, and use an IQ battering ram to keep accumulating "stuff", I can honestly say that my most stimulating and truly "normal" conversations are with a son who has the rightful place as any child his age.

No matter the nay-sayers in our world, people with different abilities remain the most humane people.

I recently had a very dear friend with cystic fibrosis advise another young couple to abort their CF+ fetus. When she found out they went through with it, she called in tears realizing that she had basically told others her life wasn't worth living with the pain and suffering of dealing with her disability. It is so sad that even though she knows her life is of value, society has still convinced her that it isn't.

thank you so much for your response and your idea of what I could answer next time someone approaches such a thought and tries to convince me, that I cost this society too much.

Maybe living in Germany still influences my opinion deep down inside of me. That is why everyone in my country always has to remember our past...

I am a first of a generation surving such complicated heart disorders due to better forms of surgery and good medications. I always fight for those who are younger than I and have chd. But sometimes it is so hard loosing friends at such a young age and hearing sentences like "and than you are still doing so good healthwise?" that you simply get very very sensitive about still being on this planet.

HUH??!! I am left slack-jawed.... And this guy works with people? I almost said in service of people, but his statement belies any service he thinks he is provding. I hope someone in the room reports this guy to his employer and he is taken to task for this. Words escape me... Disgusting!Michael

Wow, I can't even being to understand what you went through and how you must have felt, But I think you handed that situation very well. I can't belive that someone would have the nerve to said that! You really opened my eyes up to real life situations that can happen anytime, and as a DSW student I hope that I can stand up like you have done today inn my furture. Thanks. CC

I'd like to echo the shock that i'm hearing here, but I just can't. I'm surprised, and in the moment would have been caught very off guard, only by the bluntness of his statement, not by its essence. Unfortunately, I feel like he was verbalizing what MANY people secretly think, but would never so blatantly admit, even to themselves. The same hate/fear of disability is implied, sometimes subtly and sometimes not-so-much, all the time, everywhere from personal interactions to public policy.

That's why disability pride is such an incredibly bold message. It takes a lot to stand up to a world that views us as a burden on society, and say "I believe that I matter. I believe that everyone with disabilities matters. I believe that disability makes me a better person, and the world a better place. I like the world better with disability in it." That's a HUGE mind-bend to those who think "disability is bad" is as fundamental and indisputable as "stealing is wrong" and "world peace is good." Honestly, it's often a tough mindset for those of us inside the community to adopt. Spreading that kind of authentic understanding outside the community is asking people to challenge core beliefs they don't even acknowledge having. A bold mission, to say the least! Thank you, Dave.

The scary thing for me reading your entry was that I wasn't shocked. Since the budget cuts began here in the UK I am hearing more of this devaluation of human life amongst professionals. People costed, battles won lost again. We are going to see people taken out of the institutions returned to nursing homes because care in the community costs too much. And it's breathtaking. I was horrified about how few of my colleagues will fight for their clients, the other week I ended up shouting at two. Im exhausted from fighting so much but no one else is listening, politicians dont care, they only seem to be interested in who will pull the most votes. And I go home at the end of the day, the fear for clients is awful. My dilemma is how much do I tell them, ive always tried to be honest but can I really warn them their packages of care are being cut? I know its not directly linked to your post but whether it is a case of peoples values being hidden under a veneer or directly because of the cuts these statements are being voiced openly now.

I was in the room with you when this conversation occurred. I would have to say that I was also very shocked, put off and found the comments offensive. I am terribly sorry that such a wonderful presentation was interrupted with such hateful comments!Kacey

I recognise and can see some merit in the arguements about disabled people choosing non-disabled partners (or no partner at all) due to self-loathing and prejudice.The rest is such a far leap from this statement I cannot believe that somebody really said it!

It doesn't even make sense on a medical basis: 4/5 deaf children born to hearing parents, many disabilities due to 2 ressessive genes, random mutation and the incredibly high number of aquired disabilities- therefore the easiest answer for getting rid of disabilities is to ban cars and let nobody breed! That I could make a good argument for but the original= a load of wooly thinking and ignorance of real people.

Maybe one day I'll have the self-confidence to let some hot guy(regardless of ableness/disability)into my life but I have a lot of confidence issues to work on first which was true when I was "able" too lol

"Live what's Given" is such a profound statement of acceptance. I have been journaling for many years now.I have also gone back to find some very significant entries, that reread have been very inspiring/enlightening to me in the present.Journaling is such wonderful,creative therapy!

Dear Dave,You have articulated something I have observed in the disabled community for a long time. I have been deeply disturbed about it, also! It seems that if you have an adequate intellect, you can be forgiven for having any other disability. My experience, however, is that for many people with physical disabilities, their greatest fear is that they will appear to be intellectually disabled. I have heard so many say, "I may be (fill in the blank with a disability) . . . but at least I'm not "R!"My guess is that your questioner didn't realize that he was offending you because he recognized you as having a brilliant intellect. The wheelchair simply disappears when you begin to speak.What a terrible, terrible shame!Susan LG (can't remember my "name" on here!)

Dave this made me think of the book you recommended to Paul and which he has been reading with great interest, "Our Own Master Race." It is easy to criticize Nazi Germany, but there is an undercurrent in our own society that is dangerously similar, when worth is measured by some ideal of physical and mental perfection and it reared its ugly head in your lecture.

Dave, I was present in the room on Thurs. Thank you for responding with your heart to this person. I was shocked at his attitude, then later I thought ...there are probably a lot of people with disabilites who might agree with him. Because of their shame, because of ignorance they do not value each other. I know what you said, I heard how you felt, so many people look up to you...share this story with them.

My husband's brother is a genetic dwarf. This is a dominent mutation that means his children had a 50% chance of the same mutation. He was offered genetic testing, which meant that they expected to kill any baby with that mutation. He and his wife chose to have a baby, chose not be tested, chose not to abort a defective baby.

Their son is also a dwarf, which has liabilities, but he is a delightful child, and the world is better for him. I'm sure they would prefer that their son didn't have this disability, but they would rather have him with it than not have him at all.

As a student from Fanshawe College I was attending the OADD conference for the first time and had the opportunity to hear you and Domenic speak on Disability Pride.

As a student I was dumbfounded that such a foul comment could be made in a room full of professionals who were gathered for a common cause. I just had to say that you handled the situation in such a calm manner that it raised you a little higher on my scale of respect. (I can't even imagine the inner turmoil you must have been fighting.)

Thank you for being you, thanking you for sharing your life and thank you enriching mine.

"As awful as it is, it's a logical extension of Darwinian theory. Which is why I'm a creationist."

I don't think you should reject facts because they can be used to support an unpleasant viewpoint. Populations tend to change over time because of differential reproductive/survival success. But this success is not a measure of someone's worth - that they have just for existing. Ethics is not determined by scientific facts, but by a moral code built up from basic principles.

I was in the room from the beginning to the end of that particular session and what is in your blog is not exactly what happened, in your blog you lied and twisted the truth meaning you lied some more. Everyone can think what ever they want but how they can if they do not have the real facts.

“The world suffers a lot. Not because of the violence of bad people, but because of the silence of good people!”Napoleon Bonaparte

You all are sick, this person who seems to be a guy (according to what one or two of the comments), did no have a chance to defend himself, specially the ones that didn't even were in the room when this happened and the others are haters, just for a comment or a question, you sentenced this guy to lose his job, and I bet you wanted him being erased from the face of the earth what a creationist bunch all of you are. I am going to make it a task for me, a quest to find this person and I'll talk to him and ask him what really happened, and then I will come back here and I will let you know at least his version so we will have some fairness here, shame on you all but the last anonymous comment.Thank you

As the mother of a 2 year old daughter with Down Syndrome, it is one of my great hopes, that if she wants to have children, she can. Many more people with DS are now having children (as not so many of them are being sterilised as soon as they start menstrating), and from what I have heard (not knowing any of them personally) they do a darn site better than a lot of so called 'normal' people at it too!

But what upsets me, is the massive number of parents out there who absolutely do not want their children with DS to have children of their own. They fight for their rights to be included, to go to mainstream schools, to have regular jobs. But they are adamant that they don't want them having kids of their own.

Personally, I think they are worried about having to take on extra responsibilities of helping with the kids. But isn't that something many grandparents have to do due to neglect, drugs etc anyway? (something most people with DS don't fall into, BTW). Then there is the added worry of if the baby had DS (50% chance apparently, although all cases I have heard of the child had 46 chromosomes, so interesting statistic really), then who would be around to help that child in adulthood.

These are valid concerns. But ones we, as a society, should be willing to help them overcome. If my daughter wants to be a mum, I would welcome the idea with open arms. She adores babies (sometimes loves them to death!), and is a lot more maternal than some of her sisters. But at the same time, I wouldn't encourage her to have babies just to make a point to the world! It is her choice.

But how many choices do we, the parents, make for our children? The whole concept of adults with intellectual disabilities being children in adults bodies is something that is still a major hurdle in society, but more importantly, in families who are raising these individuals.

Disability Pride

Dedication

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.